I would definitely recommend getting another opinion. I got two!
One of our readers wrote to say her doctor told her she “shouldn’t feel any pain from UC.”
Pain is a bi-product of both Crohn’s disease and ulcerative colitis. My disease caused pain when I flared—it even felt like labor pains! I have Crohn’s. My disease is characterized by scarring—called fibro stenotic disease. UC does not usually go through the outer wall of the large intestine the way Crohn’s does with the small… So some people don’t have pain, but have diarrhea instead.
Remember, everyone is an individual, and we have different symptoms and react differently to different foods, or stress, for example. I (Dede) always say this: listen to your own body, ease off on trigger foods, like dairy or wheat, be proactive in your health care and do research and ask questions. Bring a list, and a partner or a friend, to your doctor’s appointments.
One time, I brought my husband, and he had done all this research (he’s an English professor ;)… at one point in the meeting, the gastroenterologist leaned over his desk and said to my husband, “Hey, what do you have on that drug?”
One thing to be aware of: getting off Prednisone. Did your doctor tell you to taper off slowly? My GI did. I love my team at Dartmouth Hitchcock in NH, it’s important to find a clinic and doctor you can trust who really listens to you!
Diet—yes, can cause pain and symptom flares. Don’t let a doctor fool you! Listen to your own body!
There is an excellent website-forum called www.ihaveuc.com and you should “tell your story,” and pose any questions you have there, also.
I am waiting for Dr. Jeffrey McCurdy at the Mayo Clinic — I will see him this morning April 29 at 8 AM.
I arrived last night at 6:00 pm at my hotel the Kahler Grand in Rochester Minnesota, having departed from Hartford airport in the afternoon. The flight was an easy three hour flight. The people here are extremely friendly so far.
I am not nervous, in fact I feel very confident. When I got here I was very impressed by the architecture and the huge buildings of the Mayo Clinic. Everything is so beautiful here: the artwork on the walls and the whole ambience of the place.
Dr. McCurdy was great. He’s from Canada. He is in his early 30s. He asked me tones of questions about the history of my disease. He was very thorough, and I got a complete physical exam.
My weight was 138, my blood pressure was normal, and my first rectal examination was normal. Around 40% of Crohn’s patients have some sort of anal-rectal problem. Things like fistulas or discharge. Luckily, for me, I do not have any problems there.
Enterography Is a possible test they might perform, according to Dr. McCurdy.
A new study from Rhode Island Hospital has found that MR enterography (MRE) without the use of an anti-peristaltic agent was as reliable as CT enterography (CTE, or CAT scan) in determining the presence of Crohn’s disease “without the use of an anti-peristaltic agent.”
In other words, this test exposure to ionizing radiation is less invasive, especially for children who are prone to absorbing more radiation than someone in their 50s like me!
Disease reccurrance after Crohn’s surgery is the rule, according to my doctor, at around 90%, and it comes back in 2-3 years. Patients can be asymptomatic but have disease.
I have gone 7 years!
Dr. McCurdy noted that “treating for mucosal healing is the best chance I have without complications.”
He also gave me my options and course of testing:
“So there are number of predictors that we have determining who’s going to have a more aggressive disease course: clinical predictors, imaging predictors. as well as other diagnostic tools.”
In the clinical predictors, he said, there are patients who have had several resections who have symptoms that come back immediately after the resection as well as people who don’t have any symptoms.
Endoscopic predictors (colonoscopies) are the best predictors of who will have no complications in the future.
In 2008, a Belgian clinician, Paul Rutgeerts, MD, developed an endoscopic score to predict who will develop problems in the future and it’s based on how much inflammation is found in the scope. So a Rutgeerts scored of 0 means zero inflammation; a Rutgers score of 1, which is what I had in 2010, showed some inflammation.
More than 5 ulcers and confluent inflammations — that would be a Rutgeerts score of 3 — that’s what I have now….A Rutgers score of 3 or 4: that’s when you start to get worried about future complications. Since I have a Rutgeerts score of 3, that predicts — with about 75% predictive value— that I will develop problems with Crohn’s disease in the future.
“So that’s what we have to go by,” he said, “and when you’re working with medications, you only think about people that need medications, and we also think about those clinical predictors, as well as disease recurrence in some patients that require surgery.”
If patients score less on the Rutgeerts scale, and they have a lower risk profile, they don’t need any medications; and in these patients that don’t take any medications, they scope from 6 to 12 months after surgery and look for that Rutgeerts score, which is what they’ve been doing with me up at Dartmouth.
I have no symptoms, but Dr.McCurdy said I have significant disease at this time, which is predictive of problems down the road.
The question they have now is how long has this disease been spreading, and how extensive it is.
The more extensive it is, the more aggressive they are with medications —if it’s a very small segment, then it is very reasonable to consider surgery, if I want, but the risk of surgical adhesions is high.
Dr. McCurdy will determine how long that segment is by doing what what’s called CT enterography which is a special scan to look at the small bowel.
“Okay, so what we should do this,” I added.
He said we should also get my biopsies from November, to look at the pathology slides to make sure that they confirm that this is Crohn’s disease and nothing else.
He added, “then I always do a routine blood test to check vitamin D levels and B12 levels, as that’s the area that’s been removed called the terminal ileum (he pronounced it with a long “I” sound and when I asked him, he said he is the only doctor who pronounces it “eye-leum”).
He added that whether we should be using medications, or whether we recommend surgery or no medications at all, will need to be determined…
“At the end of the day,” he added, “we will recommend what we think is best for you, and then you’re the one who ultimately makes a decision on what you do based on your values and what you think.”
He said, “I will give you several options what I think is the best approach based on the current literature and then you can make a decision on what you think sounds okay.”
More to come!